Well.....I see it's been a while since I posted. So much has happened since I strolled on the beach with Phoebe.
I have had a week of feeling glum, mixed with confusion, a tiny bit of relief and happiness thrown in also. Follwed quickly by concern for my family and friends in Canterbury/Christcurch as they deal with the September 4th Earthquake and the numerous aftershocks (must be over 400 in total by now!!). To all Cantabrians, I have been thinking about you during this time and I look forward to seeing you again soon.
We met the dashing Neuro-surgen Andrew Law at Auckland Hospital. He was freindly and approachable. Also disturbingly excited by my brain tumour....as only a man of science could be I guess ;-)
As I recall the meeting, it feels like the trailer to my own personal movie. All 25 minutes of it.
But I saw it. My brain. A comfort to see that I have one, and a very healthy one too.
It is an excellent idea to have a support person at these kind of meetings because there were moments when the MRI imaging in front of me was all my brain could cope with and the specialist's voice faded in and out beside me. I had a long list of questions written down in handbag, but not enough time to ask them all. I actually wish I had a copy of the images, I'd love to show you. If you can put aside the scary feelings, it is amazing to see inside your head!
I coped extremely well. I listened to the description of the tumour "it appears benign, larger than expected for it's position, normally seen in children, no obvious major blood supply, not imbedded in brain matter, but growth is making the ventricle duct for draining cerebrospinal fluid narrower than normal. My gut instinct would be to wait six months and monitor it. Get some history on this thing"
WAIT?!!! WHAT?!! THAT"S MY NEW GAME PLAN??!!WAIT?!!!
( I wasn't expecting that)
Next thing I knew I was out, sitting in the hospital cafe, blubbering over a very healthy sandwich which was very quickly becoming a soggy one :-(
Why the tears?..............I really don't know. All of the above is very positive. I wasn't told I had brain cancer or that it was inoperable. Maybe it was the overwhelming reality of finally seeing "it" and maybe some relief.
I spent the next few days updating people, all of them excited that things were leaning towards the positive side. Still, I couldn't shake the feeling of glumness.
I guess this is also why it took me a while to write on here. My reaction has been very different to anyone else around me, including the specialist and it has made me quite confused.
But once again, time is a wonderful thing. I've done a bit of soul searching and decided that I want my days to be happy, not full of dread.
So for those of you who are 'sciencey', brain enthusiasts or are just simply concerned or interested here is a quick summary of my current progress:
* Tumour appears benign. Not being biopsied as yet as the procedure is pretty full on surgery and has it's own risks. Biopsy will probably occur in the future though.
*Could be removed if needed. Central location means there are risks of on going consequences from the surgery (eg field of vision, memory, bleeding, death). But in reality all surgery has some of these risks.
* Located near left temple lobe, in front of Occipital lobe, but inside the ventricle that contains the cerebrospinal fluid, making the draining tube narrower. Pretty much in the middle, near back of head.
*The surgeon doesn't really know what it is and he and his colleagues have had many coffees and playground discussions over my MRI images. They probably all want to get their hands inside my head for a play.....should I be flattered? ;-)
Come off all steroids.
Wait for six months: Neurosurgeons are not keen to remove it if it is causing no harm. I am well and the surgeries are risky and not desirable if the person is essentially well.
MRI to see if growth has occurred ( or I may have miraculously reabsorbed the beast LOL)
Based on what they see and the new history gained; biopsy, drugs or removal will then be discussed.
I may simply be monitored and reviewed every six months.
I want to include here a little plug for myself. The surgeon did comment that this tumour has probably been growing very slowly for many years. He also stated that my brain and body has adjusted to housing this tumour and managed to drain fluid and function. During all this time my body has also become a wife, mother and teacher. I have a degree to my name and words like flexible, reliable and adaptable on my CV. I now have the scientific data to prove it!! :-)
So I now I walk around this planet knowing I have a tumour in my head, no drugs in my system, a fantastic diet and am feeling great!!!! I have moments when my mind drifts and I get a little scared, wanting to ring the surgeon and demand it is removed that afternoon! Then I remember the other people I sat with at the hospital and the wards I walked past. I quickly remind myself how bad it could be and how good life really is.